500,000 Malaysians suffer from this lifelong disease, but there is NO cure for it

Imagine you’re a child at the age of 9 and are being told that you have an incurable skin disease. That was pretty much what happened to Rocyie Wong, a campaigner, speaker and body-positive activist.

“I believe that I got it when I was nine years old. While you sat down in front of the doctors, and what they told you in the first ten seconds was that, you know this is Psoriasis, and it has no cure.” – Rocyie in an interview.

Psoriasis is an auto-immune disease which causes the skin cells to grow super fast. This results in dead skin that can cause itching and burning for those who suffer from this disease. About 2% to 3% of the total world population have psoriasis (that’s like 125 million people!). Even a number of famous people have it, like Cara Delevigne and even Kim Kardashian.

But back home in Malaysia, Rocyie is one out of about 500,000 Malaysian suffering from this disease. It has different effects and symptoms (which we’ll be explaining more in a bit) from one person to another. This could be why some people have mistaken it as other common skin diseases, like eczema or dermatitis.

Despite that, according to an interview with about 14 Malaysians who have been diagnosed with this disease, there are two common struggles that they all face when dealing with the disease…

 

It even goes as far as to hurt the JOINTS, and more

As mentioned earlier, each person who suffers from psoriasis would experience the disease differently depending on the type of psoriasis they are suffering from. Some like this entrepreneur, Charles Chandran, can’t be under the sun due to UV light allergy! 

Others like Sofia Lovi Ramasamy, the secretary of the Psoriasis Association of Malaysia, suffer from psoriasis arthritis which can trigger the body to attack the skin and joints. And this is pretty common seeing how 30% would subsequently be diagnosed with psoriasis arthritis.

But how bad can their experiences be? Well, besides the itching and burning, the disease can also apparently affect one’s mobility.

“What happened was back in year 2014, due to severe arthritis, I was bedridden for a year and a half.” – Sofia in an interview.

To make matters worse, the disease manifests itself on different parts of the body. For some people like Rocyie and Aliff Azhar, lead singer of local band Bear Scouts, the disease may seem more visible on them than on other people.

This only invites unnecessary attention and stares from the society. According to a survey, 40% of its respondents said they often get stared at in public! This can impose a problem to most people especially when it comes to self-confidence.

Rocyie, whose psoriasis manifests on her face, said that a simple activity such as going to the salon to get a haircut can be a challenge. Aliff, on the other hand, claimed that strangers oftentimes come up to him and ask him if there’s anything wrong with his face.

“A stranger came up to me, pointed at my skin, saying that, “you tak mandi betul-betul”.” – Aliff in an interview.

Comments like this have often left Aliff feeling insecure whenever he leaves his house. It was to the extent that he lost his confidence to show any skin in the public as he would normally receive unwanted attention every time he goes out. He’s also not alone in this. According to a global survey, 84% of those who suffer from it oftentimes feel discriminated and humiliated for their conditions… and this is typically caused by remarks made by the society.

But the most common remark anyone with psoriasis would receive would be on how their skin disease is contagious… when it’s NOT. You WON’T be able to get it from touching someone but you can inherit it if it’s in your genes.

Despite that, dealing with remarks like these can only worsen their condition considering how stress is also a trigger for this disease. As such, it’s really important for them to keep everything in control. Normally, this would be done with proper medication and treatment. However…

 

… a lot of Malaysians with psoriasis cannot afford better treatments 🙁

The worst thing about psoriasis is how it has no cure at the moment, BUT there are treatments to control the symptoms. They range from therapies like the phototherapy (yes, light therapy) to medications like steroids and ointments. You can check the type of medicines and treatments here and here.

Although medication is meant to help patients, they can sometimes backfire. For instance, those taking steroids to control flares might end up with steroid addiction. And if you’ve read our previous article on the disease, we’ve mentioned that although steroids work wonders in making the symptoms go away (read: temporarily), it could come back even worse when the medication wears off.

This is why it is best to consult a doctor if you think you might have psoriasis to avoid the wrong dosage of medication that can impact other parts of your body – your kidney, for example.

Despite not having a cure, there are more advanced, long-term solutions with fewer side effects for the disease. However, these treatment are normally pretty expensive and most Malaysians who have the disease CANNOT afford the treatment. We tried searching for the treatment cost breakdown but there wasn’t a specific treatment that would suit everyone.

What we found though are costs of each medication and treatment. For instance, according to dermatology.org.my, a biological treatment can cost you up to a whopping RM50,000(!) a year.

A local study pointed out that since most psoriasis patients in Malaysia suffer from moderate form of the disease, the cost of medication and treatment can range from RM5,000 to RM36,000 depending on the type of treatment and medication received by a patient. Imagine having to bear this cost forever, because psoriasis is a lifelong disease. #pokai

And this is a serious problem because leaving it untreated can cause even more health problems. Without proper medication and treatment, they can develop other chronic diseases and problems, such as cardiovascular disease, type 2 diabetes, anxiety, and even depression. 

“Psoriasis has made me depressed until I don’t want to put myself out there anymore.” – Aliff, excerpt from Norvatis Malaysia Facebook.

This is why the Psoriasis Association of Malaysia decided to come up with an online petition to the Health Ministry to help Malaysians with psoriasis to get access to better and affordable treatment. But unlike your usual petition, the association has collaborated with Norvatis Malaysia and songbird Zee Avi to garner support through… a song!?

Yes, a psoriasis music video. 

Zee Avi sat with 14 Malaysians who have been diagnosed with psoriasis to find out their daily struggles and hopes as patients. And with these information, she wrote a song called ‘My Skin‘ which was performed by those Malaysians themselves! You can check the music video here:

“At Novartis, our mission is to discover new ways to improve and extend people’s lives, and this is guided by our purpose of reimagining medicine. Backed by this belief, we are pleased to support the Psoriasis Association of Malaysia’s petition to gain better access to treatment.

Psoriasis, if left untreated can lead to other comorbidities that can leave a lasting impact on the patient, hence it is important that we act on it now.” – Patrik Grande, President and Managing Director of Norvatis Malaysia.

At the end of the day, Malaysians with psoriasis only want people to treat them like… people. They want society to realise what psoriasis really is, and that there’s nothing to be afraid of.

So now that you know what this disease is, you’d know how to react whenever you meet anyone living with it. And if you’re interested to help them get access to better treatment, you can sign the petition here.